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Wessex SDE enables world-first research featured on the BBC

News

We are pleased that the innovative Data Sustains Life project, led by the Pre-hospital Research and Audit Network (PRANA), has been featured by the BBC. This pioneering research seeks to link road crash data with health records to generate new insights into traffic collisions, with the aim of reducing severe injuries and fatalities on Britain’s roads.

The project, driven by the University Hospital Southampton and the Transport Research Laboratory, will bring together data from ambulances, hospitals, coroners, police, and government agencies across Thames Valley, Hampshire, and Dorset. By integrating these previously siloed datasets, researchers will be able to uncover patterns, identify risk factors, and propose evidence-based interventions that could help save lives.

The Wessex Secure Data Environment (Wessex SDE) is driving this project forward by securing vital data-sharing agreements, standardising data, and enabling secure linking across multiple sources. Our expertise ensures the data is prepared for seamless integration while maintaining strict privacy and security standards. While the research has not yet begun within the SDE, our groundwork is essential—laying the foundation for high-impact, data-driven insights that will shape future road safety research.

The BBC feature also highlights the project’s long-term potential to scale nationally, influencing both UK policy and global best practices in road safety. We are proud to contribute to the preparatory stages of this work, helping to lay the foundations for meaningful, data-driven research that could have a lasting impact on public safety.

Read the full article on the BBC website.

First dataset added to SDE will support improvements in treatment for bladder cancer

Milestone

The Wessex Secure Data Environment (SDE) has successfully onboarded its first dataset, confirming it as fully operational for secure data handling.

The data onboarding milestone marks the second major milestone in the pre-release phase to demonstrate and test the Safe Data and Safe Projects principles. This is a crucial step for the full launch in early 2025, that will support advanced research to improve patient outcomes regionally.

It will provide a real-world demonstration of the SDE’s operational capability and readiness to support advanced research, while maintaining the highest standards of privacy and governance.

The study will be looking at survival rates and treatments for a serious and aggressive form of bladder cancer, High-Risk Invasive Urothelial Bladder Carcinoma. It aims to improve the care pathway for patients to help identify the disease earlier, improve outcomes, and enable new research into diagnostics and treatments.

Further information about the research project can be found on our Your Data page, under governance and our News section on research – Bladder cancer case study.

First dataset proves operational capability of Wessex SDE Pre-Release

Governance

The Wessex Secure Data Environment (SDE) has successfully onboarded its first dataset, confirming it as fully operational for secure data handling. This is a crucial step for the full launch in early 2025, that will support advanced research to improve patient outcomes regionally.

The dataset onboarded is for a bladder cancer study, ‘Describing Overall Survival and First-Line Treatment Patterns in High-Risk Invasive Urothelial Bladder Carcinoma Post-Resection Patients’, led by Professor Simon Crabb, Principal Investigator and Medical Oncologist at UHS. The project aims to improve the treatment of patients with high-risk invasive urothelial bladder cancer across Wessex who are being treated at UHS as the tertiary cancer centre for the region.

The data onboarding milestone provides real-world demonstration of the SDE’s operational capability and readiness to support advanced research, while maintaining the highest standards of privacy and governance.

The onboarding of the initial dataset demonstrates critical technical processes, ensuring compliance with our legal and regulatory framework and the Standard Operating Procedures (SOPs) designed to uphold these standards.

Processes proven at the data onboarding milestone include securely transferring data into the SDE from external sources, applying robust de-identification processes, linking data across systems, validating its integrity and accessibility within the platform, and testing the SDE’s key safeguards, such as encryption, data airlock systems, and access controls.

This success builds on the launch of the Pre-release SDE platform in December 2024, which marked legal and regulatory assurance the technical platform meets stringent data protection and security standards for handling NHS data.

In line with the Pre-release SDE’s interim governance arrangements, the Bladder Cancer study has independently secured Health Research Authority approval.

Approval to move the dataset onto the SDE was given by the University Hospital Southampton (UHS) Data Access Committee, 3 September 2024, with data flowed into the Wessex SDE on 17 January 2024.

By bringing together different types of data, from multiple departments, in a single consistent dataset using the SDE, we will be able to analyse the ‘real world’ approaches to patient care taken by our clinical teams. In doing so, we will be able to benchmark our compliance with national gold standard treatment options to ensure that patients are receiving the best care possible.

In addition to highlighting options for immediate changes in patient care pathways, we anticipate that this will allow for new research hypotheses to be generated for future prospective research studies.

Further information about the research and public benefits can be found in our case study.

 

Survival and treatment for high-risk bladder cancer

Research Project

In line with the recommendations from our public panel, the SDE will provide transparency regarding the use of NHS data for research.

Our first research project to use the SDE platform will be a new bladder cancer dataset. This new dataset has been uploaded to the SDE, in line with our current interim governance arrangements, as shown in our milestone update. Details about the research and its ambitions are provided in the case study below.

The challenge

Bladder cancer affects approximately 10,000 in the UK every year. Clinical outcomes remain challenging, and improvements have been modest over many decades. However, improved understanding of the biology of the disease, and new experimental treatment options, have renewed optimism in recent years.

Local context

The Wessex SDE is excited to launch ‘Describing Overall Survival and First-Line Treatment Patterns in High-Risk Invasive Urothelial Bladder Carcinoma Post-Resection Patients’ as the first study to use the Pre-release SDE platform. Each year between 100-150 patients are treated at University Hospital Southampton NHS Foundation Trust (UHS). UHS is active in multiple research projects to try to bring about improvements in patient care for bladder cancer.

Bladder cancer is a complex disease. Excellence in diagnosis and care needs multiple teams working together across nursing, urology, medical and clinical oncology, radiology and pathology. This results in very complex and diverse data records across multiple hospital systems that are time consuming to analyse and not well connected.

Delivering the research and benefits to patients

Details from 78 patients are being used in this study, using routinely collected historic data that has been de-identified before it is entered into the SDE.

By bringing together different types of data, from multiple departments, in a single consistent dataset using the SDE, we will be able to analyse the ‘real world’ approaches to patient care taken by our clinical teams. In doing so, we will be able to benchmark our compliance with national gold standard treatment options to ensure that patients are receiving the best care possible.

In addition to highlighting options for immediate changes in patient care pathways, we anticipate that this will allow for new research hypotheses to be generated for future prospective research studies.

Commenting on the milestone, Prof Simon Crabb, Principal Investigator and Medical Oncologist at UHS, said:

“Bladder cancer is a difficult disease to treat effectively, and it requires a cooperative approach across multiple medical specialties. By bringing together the information held at UHS, across complex data systems, we will be able to consider improvements to patient diagnostic and care pathways that we hope will improve on patient outcomes and patient experience. It is really exciting to see the SDE approach starting to unlock this potential which has previously been impossible to harness.”

Data Use Register

Governance

The below registry includes details on the research projects hosted on and using the Wessex Secure Data Environment.

DAA: Data Access Approval

DSA: Data Sharing agreement

Data field Definition
Project name Describing Overall Survival and First-Line Treatment Patterns in High-Risk Invasive Urothelial Bladder Carcinoma Post-Resection Patients
Lay summary Details from 78 patients are being used in this study, using routinely collected historic data that has been de-identified before it is entered into the SDE.

By bringing together different types of data, from multiple departments, in a single consistent dataset using the SDE, we will be able to analyse the ‘real world’ approaches to patient care taken by our clinical teams. In doing so, we will be able to benchmark our compliance with national gold standard treatment options to ensure that patients are receiving the best care possible.

In addition to highlighting options for immediate changes in patient care pathways, we anticipate that this will allow for new research hypotheses to be generated for future prospective research studies.
Unique identifier SDE_WXS_PROJ_52
Contracting organisation name Trading name * UNIVERSITY HOSPITAL SOUTHAMPTON NHS FOUNDATION TRUST
Legal name of contracting organisation As above
Website links to find more information Bladder Cancer – HRA approval
Date of counter-signed DAA/DSA 17 January 2025
Period of DAA End date 31 July 2026

Pre-release SDE governance authorisation

Governance

The SDE is now validated as a “Safe Setting” under the Five Safes framework when used as a platform-as-a-service. Approved research users must implement their own governance processes to ensure full compliance.

The Pre-release phase of the Wessex Secure Data Environment (SDE) has been approved following a comprehensive evaluation process. The Clinical Informatics and Research Unit (CIRU) at the University of Southampton, our technical platform provider, has confirmed that the SDE complies with all relevant regulatory requirements and meets the highest standards of security and privacy for managing NHS data.

CIRU has also developed a robust set of Standard Operating Procedures (SOPs) to ensure operational readiness and good governance. These have been thoroughly reviewed and validated by the SDE operations team. Based on these assurances, the Senior Responsible Officer has authorised the Pre-release phase, enabling structured testing to confirm the platform’s functionality.

Governance

All datasets and research projects using the Pre-release SDE as a platform-as-a-service must have separate valid governance approvals to do so, including NHS Health Research Authority (HRA) consent or equivalent ethical and legal clearances.

The Wessex SDE will use the University Hospital Southampton NHS Foundation Trust’s (UHS) Data Access Committee (DAC) to check and validate these approvals, in line with its HRA authorisation.

This governance process will ensure compliance with the Five Safes principles of Safe People, Safe Data, and Safe Outputs, underpinned by robust SOPs and continuous monitoring.

Patient involvement and opt-out

The Wessex SDE puts patients and the public at the heart of decision making and ensures that public representatives are actively involved in the development and design of our SDE.

You can choose whether your de-identified patient data is made available to researchers by the Wessex Secure Data Environment.

Your choice will not affect your care. 

Donating your patient data ensures that researchers have more complete and representative information for research into new treatments and technologies.

If you’re happy with your information being used, you do not need to do anything.

Further information about your choices is available on the NHS website – your NHS data matters.

You can complete the national data opt out form on the NHS Digital website here.

The phone number for the national data opt out is 030 03 03 56 78 – Monday to Friday, 9am to 5pm (excluding bank holidays).

Ongoing consideration is being given to a potential local opt-out option. This is being discussed with the NHS Research SDE Network, Health Research Authority and members of the public.

Wessex Pre-release Secure Data Environment (SDE) Launch

News

Wessex Secure Data Environment Pre-Release platform achieves key milestone in data security and research readiness

The Wessex Secure Data Environment (SDE) is pleased to announce the pre-release launch of its secure research platform, marking a significant step toward advancing health research in the Wessex region.

The Wessex SDE is an NHS-led platform that will provide an online environment for secure, privacy-protected access to health data. It will unlock the potential of NHS patient data to support research, create life-saving new treatments and medicines, and bring wider benefits to patients and our NHS.

The Pre-Release SDE launch marks the readiness of the technical platform to hold data, and assurance that it meets stringent data protection and security standards for handling NHS data.

The Pre-Release SDE platform will initially be accessible to a limited group of authorised researchers through a Platform as a Service’ (PaaS) model. Researchers will be required to obtain separate governance approvals to use the platform, including NHS Health Research Authority (HRA) consent or equivalent ethical and legal clearances.

Interim governance and quality oversight for the Pre-Release SDE is being provided by the Data Access Committee (DAC) at University Hospital Southampton NHS Foundation Trust, while a permanent governance framework is finalised.

During the Pre-Release SDE phase of operation the SDE team will finalise the operational governance model and undertake user testing. Adoption of a standalone governance framework and full release of the Wessex SDE is planned for end March 2025.

Wessex SDE Pre-Release Version

Milestone

The Wessex SDE is launching a pre-release platform to establish its secure technical infrastructure, built to the highest standards of safety and security of NHS data. During this phase we will finalise operational governance requirements with stakeholders and the public and undertake user testing.

The pre-release platform will be available to a selected group of approved researchers as ‘platform as a service’. To ensure appropriate use, researchers will be required to obtain suitable governance approvals, including NHS Health Research Authority consent or equivalent legal and ethical authorisations. Interim SDE governance and quality assurance is provided by the Data Access Committee at University Hospital Southampton.

Wessex SDE – Who’s who

Governance
Wessex SDE Who's Who

The Wessex Secure Data Environment (SDE) is managed by the NHS, covering two Integrated Care Boards (ICBs) across Dorset, and Hampshire and the Isle of Wight, for a population of nearly 3 million.

The Wessex SDE has an Executive Sponsor Group that oversees the programme. This group is underpinned by our Programme Board, who meet monthly to review progress, and a Leadership Team who provide the day-to-day development of the SDE. The Leadership Team is further supported by 6 working groups, focused on delivering the key objectives and milestones.

The Working Groups include:

  • Programme Manangement
  • Communications and PPIE
  • Information and research governance
  • Target operating model
  • Technical architecture
  • Collaboration and the Southern Consortium

 

A new era in treating cancer – The NHS Cancer Vaccines Launch Pad

Research Project

The NHS Cancer Vaccine Launch Pad (CVLP) is designed to fast-track the development of cancer vaccines, improving patient access to clinical trials of these potentially life-saving treatments. Thousands of patients across England, including those at University Hospital Southampton, are expected to join the trials.

Cancer vaccines aim to teach the body’s immune system to fight cancer and give it an immune “memory” to help prevent the cancer returning, similar to how a flu jab can protect you against the winter flu.

Through the CVLP, people with cancer who are receiving treatment in the NHS, including patients at University Hospital Southampton, can be assessed to see if they might be eligible to join a cancer vaccine clinical trial.

This collaboration, initially with pharmaceutical company BioNTech is a significant step towards realising the potential of these personalised vaccines in cancer treatment, in the hope of transforming patient outcomes in the future.

Dr Victoria Goss, Head of Early Diagnosis and Translational Research at the Southampton Clinical Trials Unit says “The first trial included in the CVLP is only for patients with a particular type of colorectal cancer, as that is what the vaccine is targeting. But as the programme expands, more vaccines targeting other cancer types will be brought on board, giving more patients the opportunity to take part.”

How will the Wessex SDE support the CVLP programme?

The challenge with a national research programme of this size is that we need to manage large amounts of data and share this between hospitals in a very secure way.

As the programme develops and we start to identify patients for more than one trial the SDE will allow us to securely bring together this information in one place.

All of this is powered by NHS data and will use the SDE to unlock the ability of this data to support the development of life-changing new treatments and cancer vaccines and will make the health and social care system more efficient, effective and safe.

For more information on the NHS Cancer Vaccine Launch Pad, visit the CVLP website and watch our explainer video.